Trapped By Illness

cbcb67c91ceb2ff56bdd60601c9eaf64Have you ever been somewhere that you really really didn’t want to be?  All you can think about is the moment you get to leave. The feeling of slipping back into your pajamas when you get home and hitting the bed like a ton of bricks. The random thoughts that run through your head –  this time tomorrow, I won’t be here. In just three more hours this will be over. This is just a few hours out of my entire life, I can do this.

 

Now, imagine that feeling for the rest of your life. Only you aren’t somewhere you don’t want to be. You are just trapped inside your own body which is breaking down at every single turn you make. You can’t even find a comfortable position to lay and exist in bed. It is miserable.

 


imagesNot only are you overtaken by pain from doing merely nothing besides waking up, but you know all of the things you should be doing are going undone and it is all your fault. You know you look lazy, crazy, and useless to the people around you but you have learned to just accept this label. It’s not fair, but life isn’t fair. This is a saying I have said to my kids more times than I can count and it has come back to bite me tenfold. – “Life’s not fair.” “The only fair you are going to find in life comes to town once a year.” “You buy your tickets and you ride your rides and that’s all the fair you get.” I don’t even get that. I can’t walk around a fair. I struggle to walk around the grocery store.

 

chronic-illness-memesMy 16-year-old son does all of my grocery shopping. I haven’t been to Walmart in months. I am so grateful for him doing this task for me and he will never know just how much. I think about how quickly they go from 16-year-olds to adults living elsewhere and think that by then my house will be clean. By then I will be able to do my own shopping. And then reality hits. By then, I will probably be worse off than I am now and I won’t expect him to do my shopping anymore. By then, what the Hell will I do?

 

I think when you spend so much time accepting the things you can not do it causes you to put off even the things you can do. For instance, writing in this blog. I keep putting it off and I don’t have a reason why. If I’m being honest, writing here is comforting because I am hopeful that sharing my feelings causes someone out there who is having the same life struggles to feel less alone if they stumble across my blog. I am holding on to the fact that my inability to do what I want will somehow encourage others.

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For several months I have been trying to build a store in Shopify that piggybacks off of my blog. So far, it has only been a hobby which I am constantly trying to make profitable.  I have never sold a single thing but I am learning a great deal about what to do and what not to do as far as designing goes. If you have time, check it out HERE.

 

IMG_6395I know this has been a short post and the posts haven’t been happening a lot lately. I do hope to change that very soon. If you have time to leave me a comment, I really do enjoy hearing from others just like me. I hope you all have a Happy St. Patricks Day!

Why the Government has NO place in Healthcare

Living with a chronic illness, particularly the silent variety, is enough to drive you mad. As if the illness itself wasn’t bad enough, you also have to talk your doctors into believing you. We live in a world now where one feels comfort in finding out they have a diagnosis, no matter how bad. I remember feeling the overwhelming feeling of happiness followed by a sucker punch of every bad feeling under the moon when mine was handed down. Finally, I found a doctor to believe me. Finally, I found out I am not, in fact, crazy or making it up in my head. Finally, I wouldn’t be perceived as a pill seeker. Finally.

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Cue the affordable health care act. You see, now that I had a diagnosis, that also meant doctors knew which forms of treatment to try. This meant more trips to the doctors and specialist which meant I would come to better understand my insurance plan. I would come to know that the insurance I just trusted would have my back, didn’t. I would understand that the state I have lived in my entire life blocked the part of the health care act that might have actually helped me in my situation at the time. I would learn that there was much more to learn.

 

I believe that there needs to be an answer to better healthcare in the United States, I agree with Obama there. What I don’t believe in is rolling something out to the people that isn’t ready for market. This isn’t clothing or something material. This is the care given to people who are sick or to prevent them from becoming that way. This is about not killing off your people because they couldn’t afford healthcare. Politicians have no place in my health care benefits, decisions, plans of care, or any other aspect of it.

 

If the state of NY can say that a womans choice is hers and hers alone because it is her body and they can approve killing babies that would very much be viable then why on God’s great Earth can’t men and women decide who or what forces their health care providers and insurers to make the choices about THEIR body? Are we really saying that the murder of babies trumps the rest of the country’s ability to receive medications or treatments that would greatly benefit their quality of life?

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As if politicians weren’t enough obstacles to overcome we now have a new epidemic.  A few weeks ago it was time for my three month check up which I have had to go to for years. Each visit is to discuss my treatment and any needed prescription changes. Additionally, because some of the medications I take were controlled substances, I would need to attain three months of refill prescriptions. Every now and then, and also unannounced for obvious reasons, I would have to fail a drug test to prove I was actually taking all of the medications that were prescribed to me. If you have ever had to remain on medicines like this, you have been through this as well.

 

Given my frequent flyer miles visiting the doctor’s office every three months, you would think the information I was given regarding my medicines wouldn’t have come at such a surprise. You would think that what I am about to tell you happened would have been discussed at least at my previous visit.  There is a common word in my previous two sentences: think. This is a word you expect doctors to do since they have been through so much school and training, however, its become more of a thing of the past for most people in this day and age. We don’t need to use our God-given brains anymore, we have computers and algorithms and case studies on other people, places, or things to tell us right from wrong. Noone uses intuition anymore. No one trusts anyone anymore, least of all themselves.

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Back to the story of my doctor’s visit. I go to a doctors office who has a lot of residents there learning. I have always been okay with it. I have been of the impression that the younger people with less experience often prove to be better doctors because they aren’t poisoned by their past patients and thinking they know for a fact what is wrong with me based on what was wrong with Sabrina 18 years ago when she presented with the same things. Furthermore, they have more to prove. They want to stand out. They’re ignorant to the thought of having to make their recommendations suite their politician’s needs.

So, since I was diagnosed I have been through another doctor’s residency. The last appointment with her was appointment before this last one. I really liked her. I really liked the one before her. After all, she was the one that finally trusted me and eagerly helped me find out what was wrong.  She was my knight in shining armor. My hero. Her predecessor had big shoes to fill and I think she did, until last month.

So, I am waiting to meet my next partner in all things Melissa – the medical version and I think back to hearing the nurses discuss which medication group I would be under just moments ago and wondering what they were talking about. Finally, the doctor who didn’t look a day older than my 16-year-old son comes into the room and begins talking about every single medicine I am on and why.

 

I am thinking, in the back of my mind, why they need all of these tablet computers and physical files for if the doctors aren’t going to use them to keep up with my past encounters and medications so they could avoid having to go through this every single time I am seen. However, I indulge her. I speak on her level as I have learned to do since having to obtain my very own medical license from the University of Freak and Google. After all of this is over she tells me that she can’t write me a refill for my Adderall or my Ambien because “they” – whoever that is – won’t let her. She can’t write a prescription for both a stimulant and a barbiturate (downer) at the same time.  They are both considered addictive and counteract each other.  And so my reply was — I can understand what you are saying, however, Adderall has never acted as a stimulant to me. In fact, it has the complete opposite effect on me along with any other person who has been rightfully diagnosed with ADD or ADHD. Further, what law is this that you are speaking of because I haven’t read or heard about it anywhere, I replied. you-dont-look-sick-said-no-invisible-chronic-illness-sufferer-to-another-795aa

 

Her answer was pretty clear as well as vague, “a combination of your insurance and new laws clashing, New Year, New You” she said happily. I’m thinking of a lot of different 4 letter words I would love to reply but I didn’t. Instead, I sat there with tears rolling down my face because of all of the emotions I had suddenly been through right there at that moment. Each tear made me feel more and more like a drug-addicted pill seeker.  I am sitting here back at square one with doctors and how they have decided to help me. Matter of fact, I am before square one and back out in left field on the backside of hell. And she speaks these words which just add fuel to the flame for me. “I can write you for one, but not the other”. She sits there speaking words that indicated that she fully expected me to chose Adderall over Ambien while also suggesting some other medicines I have already tried before finding that Ambien works best for me. I felt like we were playing a medical version of “Go Fish” trading out medicines for other medicines. A “pick your poison of choice” eeny, meany, miny, moe game with pleasure pills (in her mind). I’m so pissed that I not only have to give one up for who knows why, but nobody seems to care at what this may do to their patients nor felt the need to warn me of upcoming changes on one of my last visits.

 

I tell her that I guess I would just start being a well-rested, non-attentive dumbass then because I have already been through the wringer with pain medications. I have already discovered that 99% of the medicines that would actually help with pain won’t be given to me because they don’t want to show up on some government watch list. The other 1 % insurance won’t cover and the monthly cost of it is more than the average person’s car payment. I have come to terms with these things but the ONE thing I know I can do to turn the pain off, even if for only a few hours, is take my Ambien and go to sleep and shut it out for the night.

 

Her reply? Okay, so you want to be taken off of the Adderall? YES! I do. I mean, I don’t but you say I have to so whatever.  Then she tells me that they also can’t write my Ambien for 10mg anymore. She goes on to say that they’ve (I’m still unsure who They is) decided that women should only be prescribed 5mg because their body doesn’t get rid of it as quickly as men’s. Men can still have 10mg.  At this point, think I could have spit fire.

 

I came to find out by speaking with the doctor that was my doctor before this new one, the little girl/doctor in training wasn’t spewing out new laws I hadn’t heard of to me. In fact, she was putting their doctor’s office new year, new rules policy’s off on the government. I really don’t care whose fault it was. I just don’t want to be treated this way and people who are already suffering so much just don’t want their medications messed with unless it is a stronger, better medicine.

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A week later my husband had an issue and was written a prescription for Tramadol pain medication. He received a call from WalMart Pharmacy to let him know they couldn’t fill it. They went on to say they could fill it, but they could only give him 7 days worth of them and the prescription was for 10 days. If he filled it, he’d lose 3 days worth of pills. They told him that he could take the prescription somewhere else and have it filled with no problems. This also wasn’t a law but a new rule of Walmart.

All of this brings me to this one common thought. The government and companies like Walmart need to get out of my healthcare. Our lives are being treated like some sort of red light special. Not only that, new doctors are learning to treat patients more like rules and numbers than sick people who trust in them to do what’s best for us. Patients are being forced to attain a Ph.D. on all things self health-related.

I’m sure you’ve all heard of the Netflix series “Making a Murderer”. I predict there will be a new show soon called “Making a Drug Addict”. The new show could feature any number of average persons and the guilty culprit will be a doctor or government agency. Mark my words.

Nothing New to Report

I must admit, I have a fairly boring life. I haven’t blogged much because there just hasn’t been a whole lot of interesting stuff going on in my life. I’ve been adulting, which is boring. The part of adulting that sucks the worst for me is that I am adulting far beyond my age. I hurt from old Arthur like someone at least twice my age.

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Guess what. I wrote last year about our birth month. It is just around the corner again now. Only this time Brady will be 16 and all of my worries will multiply. It is so scary sending your teenaged son out into the world with his own set of car keys. Possibly, the scariest part of parenthood. Here’s their freedom, to some extent, will they make good decisions? Did you do your part for him to know and do better? How will this unfold? Not to mention the thought of your baby flipped over somewhere on the side of the road because he hasn’t answered the phone.

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We’ve all done it. We’ve all came tenfold on the annoying things our parents used to say to us. Just last night I uttered the words “if you lock that door again, I’m going to take it off the hinges.” “What if the house caught on fire?” I internally giggle because I know I was told this more than once in my life. My father has some sort of fear of things going up in flames. Every house my sister or I have moved into has to pass the fire alarm inspection at his first visit. And if it doesn’t, you’re going to hear about it at least weekly until it is ratified.

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I don’t know if it is just my body, but you would think cold weather would be much harsher on an RA, MCTD, problem-ridden body.  I hurt far worse during the summertime.  I’m not sure if it is the rain, the heat, the humidity, or a combination of them all. I just know that it isn’t fun. And I am not able to go do all of the fun summertime things because the sun is NOT my friend.

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I think I have always held a deep hatred for heat. I can put on more clothes to keep warm in the winter than I can take off to keep cool in the summer. My body sure tries to take things off though. I melt. I sweat, I stink, and most of all, I’m miserable.

 

I am hopeful that I will start blogging more. I can’t make any promises though. I just don’t have a whole lot new and interesting going on and unlike most people, I am hibernating for the summer. I am binge watching whatever I can find. I am working as much as I can. I am adulting. Are we having fun yet?